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How bad will it be?

jrehark
Posts: 3
Joined: Mar 2013

My husband, Doug,  was diagnosed with metastasized squamous cell carcinoma the day after Thanksgiving. His primary is the base of his tongue and the epiglottis.   We live a little more than an hour from MD Anderson Cancer Center so that is where we went for treatment.  Doug went into a clinic trial at the beginning of January  for Head and Neck patients. It entailed induction chemotherapy with cetuximab, paciltaxel, and carboplatin.

 

Prior to finding out that Doug had cancer, we both lived healthy lives, organic food, working out, never smoked. Doug had seven weeks of chemo, and my once college baseball player, spent most of his days in bed.

 

Doug is on day 4 of  33 treatments of radiation. He has 15 treatment locations and spends 9 minutes in radiation. What I want to know is.....  how bad will he be after three weeks? I want to know the truth, hearing that every patient is different does not suffice. His radiation oncologist said that it would be terrible, but what does that mean?  I have watched the MD Anderson video on radiation, but what have you experienced?

 

Thank you for your experience,

Jayne

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

is that every patient is different.  That's simply the truth of it.  I have been through radiation twice.  The first time, in 1998 I had 35 sessions for BOT cancer.  I worked every day throughout treatment, ate solid food, had no skin reaction whatsoever, and lost weight only because with loss of taste, apetite decreases dramatically.  I had a another treatment last year, with 34 radiation sessions, plus erbitux, taxotere and carboplatin.  I couldn't eat solid food through most of it, but I kept my weight up using supplements.  I did get a bit of a skin burn, and  I was way tired, but able to convey myself to and from treatment, and to perform basic functions the entire time.

 

Others have experiences that will be entirely different.

 

best

 

Pat

jrehark
Posts: 3
Joined: Mar 2013

Thank you Pat, your experience gives me hope. At MD Anderson you see people that are so sick. My husband was one of them. I hope that he can continue to work and make it through without the things I have running around in my mind.

Have a good evening,

Jayne

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

I'm sorry you've found yourself here, but you have found yourself in the best forum on the internet....supportive, kind, and super smart....not only patients but incredible caregivers. 

The fact that everyone is different is a simple truth....if ever there was a place where individuality showed, it is in receiving treatment for HNC.  I didn't have induction chemo, but did get concurrent Cisplatin along with 35 days of rads.  Tho they placed a PEG tube before I started treatment, I never used it during radiation.....I somehow escaped the terrible sore throat so was able to eat whatever I wanted for the first three weeks....and then moved into the nutritional drinks for the last 4 weeks mostly to get massive calories in a quick sitting.  I had lost taste and appetite went with it.   You can expect weight loss, but again....that is different.  I only lost 16 lbs during treatment, while others lost incredible amounts of weight.  I only went thru one 5 day period where the skin on my neck got pretty scorched....as luck would have it, the rad machine broke down at that time, and my neck righted itself with those five days of rest from rads.  For some the burns were the worst part of treatment.  It was the adjuvent chemo that I had the most trouble with.

All thru treatment I made sure I got outside nearly everyday, took a walk....even when it was the last thing I wanted to do.  I made sure I swallowed something everyday, even if it was little sips of water....the important thing to remember is this is one day at a time....don't get caught up scaring yourself with the future.....getting thru this day only, and letting tomorrow take care of itself.

This forum will take you by the hand....and lead you thru the daily practicalities....the how-to's of getting enough hydration (SUPER important).....enough nutrition (also very important).....tricks and tips for getting over the hurdles.  Doug is going to get thru this, I guarentee it!!  He will come out the other end of the tunnel, pick up his life and you two will go on.....not so worse wear as it might appear when you're still at the beginning of the tunnel.

p

 

corleone's picture
corleone
Posts: 162
Joined: Jul 2012

I have/had Nasopharyngeal Carcinoma (NPC), stage 3. For details regarding my treatment, please check my profile. In a nutshell, I had 35 rads (70 Gys), 2 concurrent cisplatin and 3 sessions of carboplatin + 5FU post radiation.

OK, so no sugar coating. The first 2 weeks I didn’t feel changes, except perhaps, of a slight nausea. During this time the worst was the cisplatin concurrent chemo, administered during day 4 (should have been Day 1). Starting with week 3, things started to go from OK, to bad, and then to worse. The taste loss was the most unbearable (for me). Dry mouth started to kick in after 4 weeks. Pain (mouth, especially during swallowing) added during week 5. The second chemo session (Day 22) quickly deteriorated the situation, but only for 3-4 days. By the end of the treatment (and 1 week post radiation) I had the full panoply of symptoms: complete loss of taste, of saliva (worst during night, I had to get up every 30 minutes or so to sip water); mouth and throat pain (due to ulcers, thrush); nausea; gag reflex triggered easily; skin problems (burnt skin, very painful at the areas that were radiated most); hearing loss (~50% cause mostly by chemo but also by radiation); intense fatigability. Add to this constipation (and surely hemorrhoids), issues with the g tube (local pain, not intense but nagging, some slight local hemorrhage cause by granulation tissue), short term memory loss (mostly cause by chemo), loss of weight (25 pounds).

What encouraged me immensely was the positive feedback received from the members of this forum and also knowledge gained from older posts (and the superthread).

It sounds bad, and it is hard, but doable. I slowly recovered and continue to do so, 3.5 months after last treatment (6.5 post radiation). The most important thing is that I am still here, and almost back to the old me (well, changed a bit).

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Jayne,

I joined the boards back in January. There are a lot of great folks here that will share their experiences and help guide you along the way. I'm a relative newbie to this journey having only 8 (of 30) rads and 2 (of 6) chemos (Cispatin) under my belt. So far so good. Not too sick from either (yet). I'm feeling like I have a bit of the flu right now and as it did last week, it will get a little worse until Wednesay and hopefully start to ease off by the weekend. My throat, although a little sore is Ok. I still have my taste buddies and saliva (but that's going away fast). I fully expect to get beat up. Having been blindsided a couple of times prior to treatment from surgeries, I gained some callouses along the way and have been going in eyes wide open as of late. I've been on preventative meds for the pain. Nuerontin for throat pain and a dose of liquid oxycontin 30 minutes prior to meals to help with eating. Swallowing has been an issue since surgery but we're working on it. 

Everyone is different is a mantra here and it's true. One thing is for sure, despite our histories, our lives change the moment we hear "You have cancer". Concerning the treatment and recovery? Look at it like this....It's one thing to look at pictures of the Grand Canyon, it's another to stand on the edge.

One day at a time... make sure you tell the doctors and nurses about anything that comes up, no matter how small. They won't know if you're hurting unless you tell them. 

Positive thoughts and prayers.

"T"

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

I can only tell you how the radiation affected me. My worst memory is of the sores on my lips but I did not have any inside my mouth. I was extremely tired and in the middle of tx I slept about 20 of every 24 hours. I slept soundly forcing myself to get up to go to tx and eat. I had pain pills and took as needed. I lost about 3 inches of hair at the back of my neck between my ears. My neck, chin and below my cheeks turned dark brown after tx and then peeled. It never hurt and never broke open like some describe. My mouth was very dry but I did not experience mucous that others talk about. I've lost about 65 pounds. I would say that my energy completely returned week 5-6 post tx. I hope your husband's journey is not as difficult as you anticipate. It's not an easy ride but necessary. Be prepared but don't waste energy worrying about side effects that may not happen. Take it as it comes and deal with it. Good luck!

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

As Pat said, and you don't wanna hear, LOL...we are all different and respond differently... Nobody can truely tell you how it's going to be. I have seen big strong guys on here that have the worst time ever, I have seen small seemingly frail women that have flown through virtually unscathed for the most part.

I'm not sure if you know, and in the long run it won't actually change treatment, but from what you describe of your lifestyle, I'd be willing to bet Doug's cancer is HPV derived, as was mine... HPV is the somewhat new source of people especially in their 40 - 50 range getting H&N Cancer.

It does tend to respond pretty well to treatment, but either way, it's a rough regime'..

I did not have a PEG (feeding tube), and lost maybe 40# overall. Both Phrannie and myself had Amifostine Injections each day just before rads. It's to help relieve some of the nasty ropey phlegm that many get, and for me at least I feel it helped... I never had problems wit that.., but Amifostine in itself can give some nasty side effects.

But I never really had much of a problem with treatment either during chemo induction, or concurrent chemo/rads.

I was Dx STGIII SCC Tonsils HPV+ and a lymphnode, January 2009... Tonsils came out, nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. Then an additional seven weeks of concurrent weekly Carboplatin, and the 35 daily rads.

Starting around week 3-4 I just decided to switch calorie intake to 4-6 cans of Ensure Plus each day, plenty of water and for me a few sliced peaches to keep the swallowing muscles working ok.

I never had mouth sores, never had the thick choking phlegm, nd actually only had dark skin discoloration and peeling, like a very bad sunburn.. Some aren't as lucky and have all of the bad things I mentioned, plus a few more...

The main thing myself and many will stress is hydration and calorie intake... Do whatever is necessary for both.. De-hydration will put you in the hospital within a few days. If you don't take in enough calories, you can't fight the battle.

He will more than likely lose all taste and saliva for several months.. That too will more than likely return, just realllly slow, measured in months.

The first post on the H&N Forum is the SuperThread...a thread that has o=tons of great info, links, and covers a lot of most anything you want to research.

Anyways, like said, it's rough, it's doable and it has a very good success rate.., but you have to do your part and fight.

Thoughts & Prayers, John

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi Jayne,

Welcome to our world, where you know people really care about you and Doug is a person not a number or a diagnoses.
I had Stage3 NPC 12 yrs ago. I have 3 tatoos so I believe it was thress areas, I don't seem to have all the detailed info about my dx as others I think cause I buried my head, and just did what I was told and prayed.

Even to this day, I thought chemo was worse than rads, but my mom(my caregiver, I was 28 and newly married but he was terrible so I moved in with mom and dad till over, should have been my clue to not waste the next 10 yrs...lol) says it was rads. I was unable to work, I didn't have bad sores on neck, I did wear a pain patch and used eucerin everyday. I had food aversion, my side effect from cisplatin, so I lost 70lbs, I called my c slim fast, but because I couldn't eat, drink water(it tasted terribly like salt, eventually I could drink watered down applejuice) I was constantly getting kept after rads for fluid, you don't want that so listen to Phrannie get fluids in him. I slept most of the time and was freezing cold, I would sit outside on 90 degree day under a blanket. My mom hated that I slept so much, but I would rest and not have to think about what I had and what was happening and I think it helped me, plus I couldn't stay awake if I wanted to. I had a family friend that went to dollar store and bought me 37 presents(she was breast cancer survivor) and everyday after treatment I would come home and open one, just something to think of to keep his spirit up and give him something silly to look forward to.

The unfortunate thing is rad is the gift that keeps on giving, ask if there is anything to protect salvia glands, mine are shot, ask about speech therapy and swallowing exercises and do them, get peg tube early in case he can't eat....and finally stay positive, both of you, we will help when you ask, when this is all over you will find that even in midst of the memory of the worst time, in the end its kind of a blessing, you life will be forever changed, you'll take time to smell the roses kind of thing, I promise you'll see, and you will see us as an extention of your family, instead of a cancer support group. When you get that you can let me know.

Doug will be on a very big prayer list, and tucked into a lot of pockets I will be praying for you both. May God hold you both close and bring you rest when you need it and bring your Doug healing.

God Bless you,

Rachel

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I had stage 4 cancer at the exact same spot. They removed part of the base of my tongue my epiglotis, some lymphnodes, and my uvula and then two months later I had 30 radiation treatments consisting of 7 stations and 13 lucky zaps a day. It was hell but if I can make it through, so can Doug. I even drove myself everyday 74 miles one way for the treatment. My wife never drives outside Berks County so her job was to keep me awake on the PA Turnpike which she had to do a few times. Don't be afraid to ask questions throughout treatment. I made trips to the nurses station quite a few days. I lost 92 pounds and they threatened to put a feeding tube back in me but I ventured on with alot of ensure, smoothies, ice cream, and anything else that tasted good. I lost alot of my taste for certain foods like ice cream well into radiation but gained it all back months down the road. Ask them for cream for Doug's neck it won't do much for the sore throat but it will help the sunburn skin. I was on so much oxycodone to this day I have an occasional hankering for it but it certainly got me through the thrash which they told  me was some of the worst they seen. The others on this site can talk about a mouthwash they used that really worked. One thing I know for sure, this place and the people on it can get you through anything. Don't be afraid to ask questions and do yourself a favor and stay off the world wide web. Search engines bring up horror stories on CSN you get reality.

Listen to Rachel, make sure there is something to look forward to other than anything to do with cancer. Even something like a happy meal at McDonalds something to strive for helped me get through it. My Brother had me set aside a date a month after my radiation was scheduled to be completed. I hadn't a clue where he was taking my wife and I but it could have been a labotomy it didn't matter. By the way I had two of them and whatever they take out keeps coming back.

Keep us informed

      Jeff

CivilMatt's picture
CivilMatt
Posts: 2961
Joined: May 2012

Dear Jayne,

 

How bad will it be?  In general he will lose the ability to taste, he will find it difficult to swallow, he will gag on the mucus and phlegm, he will have sores in his mouth, throat and tongue, he will lose weight, he will be tired….hey wait a minute that was me and it wasn’t all terrible.

 

There are treatment for most all side effects (not cures).  You have to learn to deal with the taste bud problem and the dry mouth issues.  Other than my H&N cohorts I made 3 friends which say “took the edge off”  they were Lorazpam (anxiety), Magic Mouth Wash (mouth and throat sores) and Silver Sulfadiazine Cream (neck burn weeks 6, 7 & 8) and I slept a lot.

 

Don’t get to physic out, take it one step at a time.

 

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm like your husband in that I never smoked either. It was thought that it may have been caused by HPV but even that was negative. They assume mine was caused by second hand smoke that I was exposed to growing up.

Anyway, my symptoms were much like Matt(CivilMatt) with the addition of nausea and several bouts of thrush. Make sure you get Magic Mouthwash, silver sulfadiazine and nausea meds...before you need them! I also had a PEG because I had so many mouth sores and my taste went from everything even water tasting like massive amounts of salt to tasting like "nothing" literally nothing!

He is at risk for dehydration if he doesn't get enough fluids and it happens quick! I found myself admitted for about a week due to severe dehydration. So even if you have to get IV fluids a few times a week...do it! He still needs to swallow something at least a few times each day because you don't want to lose the muscle memory of swallowing, that happens too and that's a problem you don't want.
Lastly he needs to practice everyday a few times a day opening his jaw to full capacity and holding it open for at least 10 seconds. He should do up to 10 reps of this. It's best if he wedges his jaw open by using his thumb and forefinger to hold the jaw open. If he doesn't do this exercise he is at risk for trismus and trust me when I say....you don't want this! It can come on without warning and then all of the sudden you can't open even enough to put a finger in your mouth. I spent years in the dental field and I've seen it first hand. Many times it cannot be corrected. I remember warning patients to do the excerises even if they feel fine because you can be fine one day, say in the morning but by afternoon you can barely open your mouth. So please have him start doing these if he hasn't been already.

I think that's all I have for you now. Please keep us posted and feel free to hit us with any questions you may have.
Billie

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

tonight he's said many times over the last few months...."I don't think I could go through what you went through.....I don't know how you did it."  Thing is, my cancer was harder on him than it was on me.  You as the caregiver are going through a LOT....things are out of control, you're in a new world where you don't speak the language, a person you love with all your heart is suffering.  Cancer takes a toll on caregivers....more than the patient (we get to sleep through a LOT of it).....

Remember to "care for self" during this.....get out, see friends, take in a lunch or a movie....living one day at a time is a skill, but once mastered, being out of control is nearly painless.

p

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I understand what you are asking is for blunt truth...but the diffcult way you posed the "everybody is different does not suffice" is what makes you question hard to answer bc as you will see, each individual truly does / did have a different experience....so my suggestion would be to prepare for the worst and if that never happens, wonderful.

You asked, so here is mine. :)

I was base of tongue stage III with one lymph node invovled.  I had no surgery, just Erbitux and radiation.  Erbitux was AWFUL.  My Oncologist said I was "up ther with the worst he had ever seen" with regards to the reaction I had. From the top of my head all down my face and shoulders, chest, back I had HUGE whiteheads / rash (whatever they want to call it, it appeared to be acne on nuclear steroids).  If I went out in public, EVERYONE would stare.  It was painful to wash/comb my hair or even put on a t-shirt.

Radiation - by week 3 I could not eat, pain was terrible and I was quickly losing weight.  I lost 70lbs during treatment and I had a peg tube.  There is a picture of my neck on my bio if you want to see it.  Due to my neck burns we had to stop radiation two times with 4 day break the first, nearly a week the 2nd time.

After my last radiation treatment I laid in the bed for a solid month, yes, 30 days.  I felt like I had been run over by a fleet of trucks.  I did not go back to work for 2 months after my last radiation. I had my feeding tube put in before treatments even began (thank the Lord) and I did not have it removed for 6 months.  By the time my feeding tube came out I had lost 85lbs.

I am now working full time, cut almost 6 cords of wood this past fall (still cutting) hunting in the woods carrying a 60lb pack up and down mtns (I live in Idaho at 5500 feet and hunt at 7-8,000 feet).  My taste buds are back nearly 90% and I can eat anything I want except for spice foods but I have to chew really welll and I have nearly o saliva.

My prayer for your husband is that he sails through his treatments with no major affects and comes out clean and clear and has many, many, many years to enjoy you and his family ...

Keep us posted!  We care!

 

Tim

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

That famous Jack Nicholson line... "You can't handle the truth!"  Rang true initially as some of the doctors shied away from being blunt and honest concerning my cancer and treatment. My team at Johns Hopkins were straight up. My surgeon said it would be the "worst sore throat you've ever had". Well, I had heard the same thing from the first surgeon when they took my palatine tonsils and did biopsies etc. THAT was BAD! So I thought, Ok... there's my guage. Boy, I was wrong! The second surgery, selective neck dissection, lingual tonsillectomy and more biopsies etc. put the first surgery to shame and it blindsided me! 

Interestingly enough, I named my cancer "Jack".  Jack was removed via surgery on Feb 7th. 

The thing is, there are experiences that run the gamut of getting through with a few less difficulties to being laid up for close to a year after treatment. A friend has told me over and over to "prepare for the worst and hope for the best". Wise words but you still must use caution when adopting that mindset. You don't want to get yourself into a bad mental state worrying about how bad it "may" be. 

But the truth? No matter who you are and what the deal is with your Head and Neck cancer; radiation, chemo, chomo/rads concurrently, cancer treatment in general is not going to be a walk in the park regardless. It's going to suck! I'm fully expecting to get beat up, bruised and left bleeding on the street by treatment. I'm planning on at least one month laid out after treatment, possibly more. The side effects I'm already experiencing and the future "gifts" threatment will bring me are a reality and I won't be too surprised when they happen.  

If I'm to play the optimist, I'll be back to work by the beginning of June and performing again by the end of the Summer. While I'm fully aware of the other end of the spectrum, I "choose" to adopt this positive "attitude". Attitude is the only string you can pull during this whole ordeal. The other is preparation. There are items to stock up on prior to treatment. Foods, creams, ointments etc. that will help with side effects. There was a list of items posted on one of the threads. Perhaps one of the veterans can recall where. 

This site, the boards and the folks here have become part of my preparation plan. I know I can come here, speak openly and honestly and not be judged as we've all been through this. They wish us the best as we wish them the same. We hurt when they hurt and are joyous when they experience victories. It's unlike some other on-line forum experiences. I've not run into any cancer trolls here ;)~

So... As the Boy Scout motto says.. "Be Prepared"... and I'll add: Buckle Up... you're going Off Roading! ;)

"T"

Roar's picture
Roar
Posts: 241
Joined: Mar 2013

It is going to be as bad as bad as your doctor says- expect the worse and pray for the best- yur husband must keep a positive attitude- he will need you to help him with. That- I found myself feeling sorry for myself at times and needed a kick in the ass from my wife once in a while - it got me back on track- they don't call it a battle for nothing- he has to fight every day- sometime fight to get water down his throat- we need a will to survive. I am 3 months out of treatment and my hardest thing is to stay positive day after day. It is easy to talk th talk- walkin the walk is where it is at. Water, calories and protein are your best friends for the next 6 months

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

The truth is that there is a range of side effects that come from the three main treatment options: chemo, rads, and surgery.  Even when you know the possibilties, the truth is that everyone experiences a different combination, degree, and timing of side effects.  As for me, I did well until right after my second chemo infusion and then almost died from a cardiac event caused by the chemo.  I was then OK for over a year until I developed ORN, which lasted another two years.  For others, ORN doesn't surface for 10 years, if at all.  I could go on, but the truth is everyone's body reacts differently to the treatments, so the best you can do is know what might happen, and be ready to deal with whatever does happen.

The only thing you and your husband can expect...is the unexpected. So rather than think this is a predictable process, stay informed, stay positive, stay flexible, laugh when you can, and be vigilent.  As many have already told you, this is a very tough battle, but very do-able.

Mike

 

jrehark
Posts: 3
Joined: Mar 2013

I want to thank each of you that gave me a better insight into what to expect. Your direct experience has helped me to realize that I will have to take each day as it comes, and there will be good days, along with the bad. Watching him put on the radiation mask for the first time was upsetting for me, Doug was fine with it. I have written down many things to purchase to be ready for the upcoming weeks. We met with the oncologist for the second time last Wednesday, and she was not aware of some of the products that you recommend for dry mouth, mouth sores, etc. This is a wonderful sight, full of knowledge from the real experts, those who have lived it. On behalf of Doug and myself, I was to express my true appreciation for your time, your advice, and your encouragement.

Jayne and Doug

phrannie51's picture
phrannie51
Posts: 3728
Joined: Mar 2012

combined knowledge of many Dr.'s and many patients.  Lots of Dr.'s don't know about something until a patient reads it here and passes that info along.  Like Mugard for mouth sores.....works GREAT if started when rads start....once mouth sores take over Mugard can't keep up and it stings too much to put it in your mouth.

When Doug gets his anti-nasea meds after starting chemo.....make sure that Emend is part of his regime.  Emend is the big gun used during the first three days after chemo, and works wonders in keeping nausea at bay....I thought it was part of everyone's nausea plan, but have found out on here that's not so.

Stick close to this site during his treatment.....every single question will be answered. 

p

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